SMS Research Registry & Tissue Bank
Since its establishment, the National Institutes of Health (NIH) SMS Research Registry & Tissue Bank has become an indispensable in the collaborative research to study the many genes mapped to the SMS critical region.
The SMS Research Registry serves as a confidential database of individuals diagnosed with SMS to facilitate research initiatives and promote the development of improved treatments for SMS.
The SMS Tissue Bank collects blood and/or tissue samples from persons diagnosed with SMS for ongoing research to understand the genetic basis of SMS. The SMS Tissue Bank coordinates the collection, storage and distribution of DNA and tissue samples for research to all researchers in a fair and equitable manner. A coding system is used for samples to protect the identity of participants to outside researchers.
Participation in the SMS Research Registry and Tissue Bank is voluntary and does not require travel to NIH in Bethesda, MD, thereby permitting SMS families from around the world to participate in ongoing research to better understand this complex syndrome.
For more information, please contact:
Ann C. M. Smith, M.A., D.Sc. (hon.) – Principal Investigator
301.435.5475 (voice)
301.496.7184 (fax)
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